Learning to Live with Huntington’s Disease

“This is a moving true story of how people can find the inner strength to rise above it when their world is turned upside down.”
– Sir Richard Branson.

Family Book

Click the Pic to read a sample chapter

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What is this?

Learning to Live with Huntington’s Disease: One Family’s Story  is a book that is very dear to me. My mother used to be a fashion journalist and it was always her dream to be published in a book, but unfortunately she developed a very unpleasant illness called Huntington’s Disease that at first seemed to crush those ideas. However, with the astounding help of my father, we as a family contributed several chapters to a full book. But really, it’s my Mum’s book. This was around 6-7 years ago, so yes, I was a greasy teenager at the time.

Is it a medical journal or an autobiography?

A little of both. The book accounts for years worth of experience with Huntington’s Disease, from anecdotal tales to advice and of course in-depth explanations of first-hand accounts with the illness. And surprisingly, it’s a very positive and inspiring read! Since the book is written by all the family it covers all areas to do with living with a degenerative illness; Sandy’s chapter for the first-hand experience, Phil as the primary carer / husband, Brom and Danny as the children at risk, Wendy as the sibling and Chantel as the wife of the at-risk. There is also a chapter dedicated to Brian, Sandy’s father, who unfortunately died of Huntington’s before being diagnosed.

What is Huntington’s Disease?

Hoo boy, here’s the nasty stuff. Huntington’s disease is a degenerative, genetic illness that effects approximately 1 in 100,000 people. The symptoms are both physical and mental, including loss of muscle control, dementia and depression that obviously start small and get worse as time goes by.

It is not very nice.

In most cases, symptoms do not show themselves until the person reaches anywhere between 30-50, though there is a test to see if one has the gene that can be taken from the age of 18. While there is currently no cure, there is a phenomenal support base in the form of the Huntington’s Disease Association for the UK and similar branches worldwide. Research into a cure and support is also moving along at an incredible pace.

Is that a quote from Richard Branson?

Yes it is! Richard Branson has a well-known interest in Stem Cell Research, an area which could prove to be the key to a cure for Huntington’s and many other genetic diseases, and he liked the book a lot. In fact, the book has done very well for itself and received a lot of choice praise, including the following testimonials:

“I can’t thank you enough for the uplifting read I have had today – My week , and perhaps my year of work in HD, will certainly be better for it. These ‘stories from the heart are able to penetrate even the thickest of fogs that accumulate during the dark times in life. I recommend this work of hope to everyone…” – Jane Paulsen, Professor of Psychiatry, Neurology, Psychology and Neurosciences, Carver College of Medicine, University of Iowa

“This book is a compass for our thoughts, a model for our values and a tonic for our souls.”
– Professor Aidan Halligan, former Director of Clinical Governance, UK National Health Service, and Deputy Chief Medical Officer for England

But I do not know anyone with Huntington’s…

Are you doubting purchasing my Mum’s book? Would you seriously do that? My Mum has these boots.

Bionic Boots

And she will kick you with them.

But seriously, this book is not just for people struggling to cope with Huntington’s Disease. It is a template for how to deal with any supposed life-changing catastrophe. Most of the stories in the book will tell you that a beast this huge, with such far-reaching effects and changes, should screw your life up forever. Something like Huntington’s is not meant to be lived with, but meant to be feared and kept hushed up and hidden in a corner… Right?

This book is all about finding joy, optimism and the strength of will to go on in the face of something that is meant to crush you completely. It is about how my Mum can wake up every day and shout ‘Good morning!’ and mean it completely, despite everyone asking her ‘How can you go on with this?’

I love my Mum and I love this book. I know you will too.

Family Shot

(The only picture in existence where Mum and Dad look cool. That’s my handsome brother on the right who is going to kill me for posting this)

 

2 thoughts on “Learning to Live with Huntington’s Disease

  1. Philojones says:

    That’s beautiful Danny. I think I first met you only a few months after this was published – and it’s only recently that I’ve even discovered it! I think I know at least some of the protagonists well enough now to provide a little context, and I look forward to reading it as a piece of philosophy. Well done all.

  2. Lewis says:

    Christ, this moved me.

    We haven’t spoken for years Danny, but I love your site. I had no idea this issue affected your family. My thoughts and prayers are always for your mother.

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